Insanganyamatsiko y'urugomo mu gihe cyo kubyara no guhungabana kwamavuko no gutwita biracyaganirwaho - atari hamwe natwe gusa, ahubwo no mu mahanga.
Abagore baregwa ubwabo ko nabo ubwabo bigaruriye ibintu nk'ibi bakabije kandi ko muri rusange "icy'ingenzi nuko umwana ari mwiza!".
Iyi mbogamiterere byoroshye bitesha agaciro imbaraga zose nububabare bwa nyina, wumva ko ubuzima bwumwana ari ngombwa bidasanzwe, ariko hariho nibindi bintu byinshi bidashobora kugabanywa. Inkongoro ya mama katie katie kordd yanditse inyandiko nini kandi yo gutobora ibyerekeye impamvu yimyumvire yicyizere kubyerekeye "umwana ufite ubuzima bwiza" ntakintu cyiza. Yaguhinduye kuri wewe no kwikuramo gato.
Igihe nari ntwite umwana wanjye wa mbere, navuze byibuze inshuro imwe: "Gusa ndashaka ko ngira umwana muzima." Birashoboka ko nabibwiye umuntu asubiza ikibazo cyukuntu ndateganya kubyara. Ahari nasubije ikibazo kijyanye ninde nshaka byinshi - umuhungu cyangwa umukobwa. Ntabwo nibuka igihe nabivuze, ariko nzi neza ko navuze neza, kuko muri ako kanya nabyizeye. Natekereje ko igihe cyose ubuzima bwiza bwumubiri, ibindi byose ntacyo bitwaye.
Iyi nteruro yahindutse umwambi mumutima wanjye, nyuma yo kubabazwa n'ihungabana ry'ihungabana. Igihe umuhungu wanjye yavukaga, nasanze ko ushobora kubyara muzima icyarimwe, n'umutima umenetse.Abantu benshi bumvise ibyabaye ku mwana, benshi muri bo bagerageje kumva amahano banyuzemo, baravuga bati: "Nibyo, icy'ingenzi nuko umwana ari mwiza, ni ngombwa cyane."
Ariko baribeshye.
Nibyo, uburambe bwanjye buhamye bushobora kuba bubi. Nishimiye cyane ko yaba njye cyangwa umuhungu wanjye twakomeretse bikomeye ku mubiri kubera isura ye ihamye. Niba umwe muri twe yangiritse cyane cyangwa ikintu kibi, ngomba guhura nakomeretsa cyane. Ariko ububabare nababaye buracyari ukuri cyane, nubwo inyandiko yanjye itabaye mbi muri bose.
Ku bijyanye no gutwita no kubyara, ibibazo byinshi - ntabwo ari "umwana ufite ubuzima bwiza gusa."
Igitsina gore gikwiye kumva ushyigikiwe. Birateye ubwoba cyane kubyara kandi umenye ko ntawe ukwumva. Ntacyo bitwaye neza ko witegura neza, ariko mugihe hari ikintu gitunguranye gitangiye, ni ngombwa kuri wewe kumva ko abaganga batega amatwi ibyo ukeneye. Iyo wumva ukwirengagije, ubwoba nububabare birashobora kumara igihe kinini kuruta kuvuka.
Nyuma yo kubyara, numvise ntambaye ubusa, utagira kirengera, gufata kungufu no kuba ubusa.Umuhungu wanjye ntabwo yabaye panacea, byamfasha gukuraho amahano numubabaro wose, wambuwe numutima wanjye nyuma yibi bitagenze neza.
Umwana muzima ntabwo afasha kwibagirwa ibyo bintu byose biteye ubwoba numvise mucyumba gishinzwe imirimo mugihe abaganga batekereje ko ndyamye. Uyu mwana muto udashobora guhindura ko umuganga ubaga yagabanije nyababyeyi yanjye kuva hejuru yerekeza Donomis nta mpamvu, unkinga amahirwe yo kwibira nkuko nabyifuzaga.
Hamwe numwana, amaherezo, ibintu byaragaragaye neza, ariko sinari ubizi igihe navaga umwe mucyumba cyo gukoreramo - nari mbeshya kandi ndira mumaso yanjye. Sinzigera nibagirwa uburyo umugabo wanjye yahunze muri koridor, kugirango amenye impamvu umwana wacu azafatwa mubuvuzi bukomeye. Twari dufite umwana muzima, ariko ntabwo byari ngombwa.
Nari n'ingenzi kandi, kandi igihe nari mbanaga, nta muntu n'umwe wanyitayeho.
Byantwaye imyaka itanu kugirango mpure imbonankubone nuwamugaye, wankomeretse. Ntiyigeze anyibuka, ariko buri gihe yahinduye imyumvire yanjye kumubiri we no kubyara.
Ntabwo aribabaje kubyara gusa bivuguruza igitekerezo cy'uko "icy'ingenzi ari umwana muzima." Rimwe na rimwe, abana ntabwo bafite ubuzima bwiza.
Kandi abana bavutse bafite indwara zikomeye nabyo ni ngombwa. Kimwe n'ababyeyi babo.
Naganiriye na Amanda Pitts, nyina w'abana batanu ukomoka muri Nashville, uko umwana we yakiriye ubudahemuka budakora ubuzima nyuma yo kubyara. Amanda yambwiye ko abonye umukobwa we bwa mbere - Calley - yahise yumva byose.
Amanda yibuka Amanda ati: "Narebye umwana wanjye mwiza nhita tumenya ko yarimo Down. - Nabivuze kuri uyu mugabo wanjye nyuma yamasaha ane gusa. Ntiyanyizeye. Yavuze ati: "Ariko turari bato cyane ku buryo tutavutse ari umwana wa Syndrome." Ariko nari nzi ko atari byo. "
Abaganga bemeje Amanda yakeka. Igihe we n'umugabo we Robert batangiye kumenyera igitekerezo cy'uko ubuzima bw'umwana wabo butazabona nk'uko babitekerezaga, hari ikindi kintu cyabaye.
Muganga yabwiye Amanda na Robert ko umukobwa yari inenge y'ibice bigize ububi. Uruhinja rwabo rwari rufite umwobo mu mutima. Ni hafi kimwe cya kabiri cyababana bafite syndrome ya Down. Na Calley yari akomeye. Amanda yarenze ubwoba kumukobwa no kumukunda.
Yari afite imyaka 22 gusa. Mugihe cyo gutwita, ntakintu cyerekana ko syndrome ya Calley - cyangwa indwara z'umutima, ikangisha ubuzima bwe kandi ikora imyaka irindwi yambere igoye kandi rimwe na rimwe iteye ubwoba.
Muri 2018, hamagara neza yimuye igikorwa kumutima ufunguye, kubera umwobo urimo ufunzwe ubuziraherezo. Nubwo Amanda yibarutse abahungu bane n'imitima myiza kandi bidatinze ategereje umwe, ntagishoboye gutuza mbere yuko abona umwana we, kandi muganga azemeza ko umutima we uri muburyo bwiza.
Ati: "Igihe nari natwite, narose ibyo yari afite byose. Ariko ibintu byose byagenze nabi. Amanda agira ati: Yavutse afite inenge y'umutima, yafashwe atemewe cyane kubera ubuhumekero, kuko ubuzima bwe bugufi yashoboye guhangana n'ibibazo byinshi by'ubuzima.
Agira ati: "Ndacyasenga ngo abana banjye bavutse bafite ubuzima bwiza. Ati: "Namenyereye ko umwana wawe azavuka afite inenge arakanga ubuzima bwe, kandi sinzigera nifuza kubinyuramo." Ariko niyo nari nzi hakiri kare ko Calley yavukanye umwobo mumutima nibibazo byinshi bitewe na syndrome ya Down, ndacyategereje ko bitari bike. Ntabwo nigera nifuza kubikuraho cyangwa kuyihindura kumwana ufite umutima mwiza. Iyo numvise abantu bavuga ko "icy'ingenzi nuko umwana yari afite ubuzima bwiza," mpumura gato. Umwana wanjye aracyari ngombwa, nubwo yavukiye mu barwayi. "
Twizeye ko umwana azavuka neza - ibi nibisanzwe rwose bitezwa ko ababyeyi bazaza bashobora kuba bijyanye numwana we. Nta kibi kiri mu kuvuga ko wizeye ko umwana wawe azaba afite ubuzima bwiza. Birashobora kuba imvugo isanzwe, igereranya, ishobora gukoreshwa muguhirika umuntu udafite ishingiro, nkumwana wawe.
Ariko twese dukwiye kwitonda mugihe uganiriye numuntu wababaye kuberako bagomba kumva bamerewe neza kandi badahangayitse, kuko umwana wabo yavutse afite ubuzima bwiza.Tugomba kandi kumva ko iyi nteruro ishobora gutera ububabare kubabyeyi bategereje ko umwana afite ibibazo byubuzima asanzwe amenye. Ntibagomba kumwenyura mu kinyabupfura mu gusubiza igitekerezo cy'uko "icy'ingenzi ni ukubyara umwana muzima."
UKURI HANO nuko ari benshi, bameze cyane kandi bategereje umwana wabo - ubuzima bwiza cyangwa ntabwo.
Ibi ntibisobanura ko tugomba kureka kwifuriza umwana wubuzima bwiza nibindi bicuruzwa tutitaye ku bihe. Ni ngombwa gusa kwibuka ko umwana muzima atari yo "ikintu cy'ingenzi" cyonyine ", gishobora kuba, no kumenya uburyo amagambo yacu agira ingaruka kubandi bantu.
Uracyasoma ku ngingo
